Anastasia had her swallow study at the hospital
yesterday. It took place in a small room, and the RN put Anastasia in a
foam car-seat-like contraption on an adult-sized chair. She strapped
Anastasia in, put a bib on her, and the test began. A radiologist
controlled the X-ray machine and watched the swallowing, while our
physical therapist fed Anastasia.

The first food they tried was chocolate pudding. They
put pudding without barium on the front part of the spoon, then put the
barium-pudding toward the back of the spoon. (The idea is to let the
baby taste the good stuff first, in hopes she'll swallow it all.)
Anastasia tolerated this pretty well, giving the radiologist several
good sample swallows. Then they switched to mashed pears and barium,
then graham crackers and chocolate pudding with barium, then formula
with barium. With each of these, Anastasia was less and less willing to
be fooled, and in the end she cried over the taste of the barium. (It's
pretty foul stuff, I hear.) Ultimately, she called an end to the study
by clamping her mouth shut. Our physical therapist tried to give
Anastasia one last taste of the non-barium pudding (to take any bad
taste out of her mouth), but our girl stuck her lower lip out, raised
her chin, and turned her face away as if to say, "I'm not eatin'
anything you offer me, lady!"

We got to see the whole thing, and it was fascinating
to watch the X-ray. I imagined we'd see the food go all the way down to
her stomach, but the X-ray only showed her head and throat.

Anastasia was a little pouty and teary-eyed at the
end of the session, but really, she handled the study well. The RN said
most babies start crying the moment they're strapped into the chair.

The radiologist thought Anastasia's swallowing looked
just fine, but they made a tape of the session and the folks at the
feeding clinic will review it. Still, we expect they'll say Anastasia's
swallowing is healthy.

Which brings me to an interesting point. The day
before yesterday, we had several appointments, but somehow we walked out
of the house without bringing Anastasia's bottle. I was very worried,
since I knew we'd be out at her usual eating time. Still, I figured that
when she got fussy, I'd buy some graham crackers to tide her over. (Note
to self: From now on, carry graham crackers in the diaper bag!) However,
Anastasia never really showed any signs of hunger, even though we were
out several hours past her usual eating time. By the time we got home,
five hours had passed since her last meal. She normally eats every three
hours. But Anastasia wasn't even cranky. And when I gave her the bottle,
she only drank two ounces.

I brought this up yesterday, after the swallow study,
saying that I sometimes wonder if Anastasia's brain just isn't telling
her she's hungry. The RN nodded and said they always do all the testing
they can first, to ensure there isn't any way they can help the baby eat
more - but yes, sometimes they, too, think some kid's brains just aren't
sending hunger signals.

Since the swallow study was in the hospital where
Anastasia was born, we decided to stop by the NICU. (My hubby finally
agreed that since we were already in the "germy hospital," it probably
wouldn't hurt!) We were so glad we stopped by.

We waited in the (very small) lobby while the
receptionist announced our presence over the intercom, and then, little
by little folks came out of the NICU itself to visit with us. We saw a
number of nurses (including one of Anastasia's primary nurses), the
chaplain, a coordinator, one of the neonatologists - even the two
housekeepers. Anastasia started out a little pouty still, but became
quite animated and happy once she realized she was the center of
attention.

Nobody at the NICU had seen Anastasia in person since
December (except for her primary nurse, who visited us a couple of
times, and babysat for us once in the late winter/early spring). They
were appropriately impressed.

Anastasia seemed to especially enjoy being held by
her ol' primary nurse...and was quite intent on chewing the doctor's
finger. The doctor had her photo taken with us for her personal album,
asked lots of questions about Anastasia's development, and encouraged us
to drop by as often as we could. She stressed that usually they don't
get to see "their graduates" after the age of two or so, and they wished
this wasn't so. (She also commented that Anastasia's language skills
were "almost freaky." I laughed and repeated what I always half-jokingly
say: "It was those four months listening to the NICU nurses gab day and
night!")

In other news, Anastasia is now clapping! She enjoys
applauding herself when she's done something impressive. She's also
growing lots of hair; every day she seems to have more. However, it's
still looking like a mohawk, and now it's standing straight up,
Krammer-like.

August 2 (part II)

YAAAAAAAAHOOOOOOOOO!!!!!! We are celebrating today!!!
I just weighed Anastasia and she came in at 16 lbs. 2 oz.! She
finally passed the 16 lb. mark! (She's been in the 15 lb. range
since she was six months corrected age.) Hurrah for Anastasia!

August 4, 2006

Anastasia is continuing to eat decently. She ate so
well the day before yesterday, I even gave myself a break and didn't
feed her in the middle of the night. That was awfully nice :)

She also continues to be quite the daddy's girl.
Several months ago, she rearranged her nap schedule so that she'd be
awake when her daddy comes home from lunch, and for some time now, about
an hour before he arrives, she starts talking about him. She often does
this soon before he comes home for the night, also. When he walks in the
door, she squeals and wiggles and bounces, and if she thinks he's about
to pick her up, she gets even more animated. It's pretty darn cute.

August 7, 2006

This weekend - at long last! - Anastasia finally
said "mama!" (It was getting to be a serious situation; she was working
on "kitty," but I told her she'd better learn "mama" before she
learned "kitty.") She was feeling tired and fussy and I was holding her
close and patting her back. I stopped patting for a minute, as I talked
to my husband, and as clear as could be, she said, "Babble babble maMA!
Babble."

She's said "mama" several times, since, but I've
learned there is a definite down side to this. For example, when I lay
her down for a nap, instead of just crying for half a minute before
settling down, she cries, "Mama! Mama!" That is much more
difficult to ignore...

August 8, 2006

I just talked with the RN at the feeding clinic this
morning. She says that even though Anastasia has gained some weight, her
weight on the growth chart has reached a plateau. So she wants us to
come in for a consultation with the nutritionist later this month.

She also said that they'll want Anastasia to stay on
formula until she's 15 months chronological age, and that if she's not
doing better by then...(here, I held my breath, hoping she wouldn't
mention a G-tube)...they'll switch her to Pediasure, which has even more
calories. (Whew!)

Even though Anastasia is doing better with her eating
than she was a few weeks ago, she's still borderline, and every feeding
is a struggle. Most of the time, I don't stress over it. (What good does
that do?) But I do pray about it a lot! I'm still getting most of her
calories in with the cup, and I still have to get up and feed her once
at night. (Oh how lovely it would be if I could sleep through the
night!) It does seem Anastasia is liking solids more (she especially
loves oatmeal with prunes or other fruit, yogurt, baked beans, avocado
with formula mixed in, graham crackers, and Zwieback toast), but most of
her calories still need to come from formula.

I hope that on her birthday (which is coming right
up!) she'll eat lots of chocolate cake and ice cream...although she
seems to object to the coldness of ice cream and always seems to end up
with brain freeze, poor babe!

August 9, 2006

As hard as it is for me to believe, Anastasia will be
one year old this Saturday! In honor of her first, struggling year, I've
created a video montage of photographs from her birth forward. I hope
you enjoy it :)

This meant the doctor didn't feel Anastasia would
live if she was born that night, so there was no point in doing
something as invasive as a Cesarean section.

"But you can give me drugs to stave off the
contractions, right?" I asked. I knew some women stayed on those drugs
for many weeks before their baby was born.

"When a woman's water is already broken, drugs to
curb contractions don't work very well."

Silence.

Alexei drove me - yet again - to the hospital, where
the cramping subsided on its own. Still, my OB checked me into the
hospital. "I wanted you in here by tomorrow, anyway. We might as well
just have you stay. Tomorrow you're 25 weeks."

25 weeks was - somehow - she magic number. At 25
weeks, suddenly the doctors were will willing to be more proactive.

And so it was that my poor husband went home alone in
the wee hours of the morning, and I began a short but intense hospital
bed rest, where I was given steroid shots to help Anastasia's lungs
develop, met with a neonatologist (a doctor who specializes in treating
preemies), and took a tour through the NICU that had me in tears.

It's hard to believe it's been a year. It feels like
it just happened yesterday.

NOW, on to Anastasia-is-as-cute-as-a-button
news: Our dear girl is growing fond of saying "I love you." Actually,
sometimes she says "I love" quite clearly, but the "you" is garbled. But
most of the time, she says the entire thing so that we know what she's
saying, but it isn't enunciated clearly. Sort of "Uh ove u."

She likes to lay on the floor with me and touch my
face and say "I love you," and last night, she called out "Daddy!" This
got hubby's attention, so she waved. Then she said "I love you," and of
course her daddy had to pick her up :)

August 10 (part II)

Anastasia achieved three firsts today. :) The most
exciting was that she fed herself. I was giving her applesauce (another
first, as she usually refuses it), and she grabbed the spoon. So,
keeping my hand on the very end of the spoon, I let her do with it what
she would. Sure enough, she brought it straight into her mouth, took the
applesauce off, and removed the spoon from her mouth! I guided her to
scoop up more food, and she put the spoon in her mouth and ate
again...and again...and again...and again. In fact, her third first
today was that she ate an entire baby food container of
applesauce. That's the first time she's ever eaten the recommended
serving size!

August 11, 2006

I think Anastasia is sick. She's been running a fever
(between 99 and 100.6 degrees) all day long. When she's teething, the
fever's not usually so persistent. She's also vomited a little and
refuses almost all solids.

Her grandpa was sick with cold-like symptoms plus a
fever several days back. Of course, before he knew he was sick, he was
touching her. Even though he washed his hands, he could have given her
his sick germs. So far, though, Anastasia hasn't had any cold-like
symptoms.

I really hope she feels better tomorrow. She deserves
to have fun at her first birthday party!

August 13, 2006

We had a really great 1st birthday yesterday. :)

Thankfully, Anastasia's fever disappeared in the
night. (It must have come from really bad teething - not a virus.
Interestingly, though, her fever is back this morning.) But I was still
worried that it might be a tough day, since Anastasia's not used to
being around a lot of people. She did just beautifully, though. I'm
really proud of her.

The morning of the party, Anastasia wouldn't nap; she
knew something was up! So grandma's first task was to rock Anastasia to
sleep while my sister and I decorated and prepared food. (My sister and
her family came all the way from another state, just as they did for
Anastasia's baby shower.) Shortly before family and a few friends
arrived, Anastasia awoke and ate and was fascinated to find herself in a
birthday wonder land. She was captivated by the balloons, streamers, and
banners...So much so that we're keeping some of them up for a little
while.

We didn't have a huge crowd - but at one point
Anastasia found herself surrounded by admiring females and began pouting
and crying real tears. I took her outside for a little fresh air and
not-so-close quarters, and she was happy again.

A special guest also dropped by: the doctor who
delivered Anastasia. He hadn't seen her since she was in the NICU, and
we were delighted he took the time to visit for a little while. He also
brought Anastasia a special gift: a little tin case he'd personally
engraved; inside is a rare piece of mediorite that can only be found
in
Czechoslovakia, his native
country. What a sweet memento!

Anastasia did well through the opening of
packages...although she wasn't interested in "ripping and tearing" as
I'd hoped. Her favorite part of the presents was a particular pink bow,
which she chewed on for a good half hour.

I wasn't certain that Anastasia would be the least
interested in her birthday cake, either, but I still got a cake just for
her, so she could do whatever she wished with it. As soon as it was put
in front of her, her hands were in it. I gave her a taste of frosting,
and that was all the additional encouragement she needed! We found a
food she likes! But even more than eating it, she really enjoyed
squishing her hands in it. (Finger paints, here we come?)

It's so hard for me to believe it's been a year since
my baby was born. At her party, we couldn't help but discuss what a
miracle she is, and how she's changed us all. Only a little 16 lb. girl,
but already she's changing lives! What a blessing.

At the end of the party, Anastasia was worn out!

August 14, 2006

The verdict is in. Anastasia's favorite birthday
present was...a yellow rubber duck. She has barely had it out of her
mouth since she first saw it :)

Among my favorite gifts, however, was really a
present for my hubby and me: a drawing of Anastasia, beautifully matted
and framed. My sister found an up-and-coming artist (Jonathan Koch,
who's also a political cartoonist for The Washington Post) to
draw Anastasia's portrait based on a photograph. In fact, the artist has
Anastasia's drawing on his website! You can view it
here. And here's the photo it was based on:

Taken in May of 2006, when Anastasia was 6
months corrected age.

I hate to single out any presents, because each was
heartfelt in the giving and in the receiving. Thank you to
everyone who participated in celebrating Anastasia's first year, whether
it was by sending an email, giving a gift, or visiting with us at the
party.

August 14 (part II)

Anastasia saw her physical therapist today for the
first time in over a month. (Her PT was on vacation during that time.)
It was traumatic. In part, I'm sure, because she hadn't worked with the
PT in a while, in part because she wasn't feeling well due to teething,
and in part because the PT threw out a new diagnosis: ataxia.

This, apparently, is a symptom, not a disease; it can
be caused by a great many things. Generally speaking,
ataxia is a
lack of coordination. Movements are often jerky - not smooth.
Ataxia can affect any part of the body.

The PT thinks Anastasia has a mild case. She said:
"On a scale from 1 to 10, with 10 being the worst, she's probably a 2."
She feels that while Anastasia will continue to improve, the ataxia will
not go away. If she has ataxia, she won't excel at physical activities,
and may be slow at writing, running, typing...

The therapist notes that Anastasia hates it when the
PT shifts her position "too quickly," she panics when she feels
unsupported, and her movements are often jerky. She also says children
with ataxia are sometimes slower to develop the ability to eat solids.

I'm really in shock, and we find ourselves resisting
this diagnosis. Maybe we're just in denial.

We can see that yes, she likes to feel supported and
that yes sometimes her arm movements are jerky. But would a child with
even mild ataxia be able to smoothly bring an object to her mouth?
Anastasia does.

It's a difficult thing to do any research on this,
simply because there are so many types of ataxia. But what I've read
suggests that more than mere observation is needed to diagnose ataxia.

So...we have lots of questions to ask the next time
we see our PT and doctor.

And in the meantime, I wonder: Is my gut reaction
correct (just as it was when G-tubes and ROP surgery were mentioned)?
Or...?

August 15, 2006

As Alexei and I talked last night, we became more and
more convinced the PT's assessment was off. Although Anastasia tends to
be "jerky" and panicky at her therapy sessions, she isn't like that at
home. Yes, sometimes her movements are jerky or "coarse" at home, but
more often they are smooth. So unless the jerky movements of ataxia can
come and go, this doesn't make sense to us. And I can't recall Anastasia
ever freaking out at home because I moved or shifted her quickly.
Also, at therapy she's always stressed; this could be why her movements
are more jerky with the PT.

I belong to several online groups of parents of
preemies, and one parent pointed out that a great many preemies have
some form at ataxia...it's just that the baby's doctor doesn't label it
this way. Instead, the doctor may say, "She's a little clumsy." Which, I
guess, would be a slight case of ataxia? Is Anastasia clumsy? I can't
really say, since she's not crawling or walking yet...and since all
babies are clumsy when they're learning new skills.

Still, the idea that ataxia could just be thought of
as clumsiness is reassuring. The PT made it sound like Anastasia's life
would really be affected by this, even if her case is mild. She wouldn't
be an athlete or a dancer, her writing would be slow (making test
taking tough), her running would be slow, and when she grew up, she'd
probably never pass a field sobriety test - even while sober.

At the very least, we have lots of questions for the
PT.

On the lighter side of things, though, at the
beginning of Anastasia's therapy yesterday, we had some fun. As the mom,
it's my job to distract Anastasia as much as possible while the PT makes
her work. (Otherwise, Anastasia would cry the entire time.) The PT has
many toys laying around for just this purpose. I picked up a plastic
hammer that, when it strikes something, lights up and makes funny
cartoon-like noises. I was hitting myself in the head with it and making
funny faces. Anastasia must have a Three Stooges kind of sense of humor,
because she was giving us great big belly laughs. The PT loved
especially loved it, because she's never heard Anastasia laugh. :)

August 16, 2006

It appears Anastasia caught a cold at her birthday
party. Thankfully, it doesn't seem to be bothering her even as much as
her last cold did.

Anastasia and I have been working on standing; she
does this now without any bouncing, and I can just hold onto her hips
and she'll stand for several minutes. I'm also trying to get her to sit
more on her own, but she tends to either throw herself forward onto the
floor - quite dramatically - or backwards into my arms. It reminds me of
what one of the neonatologists said of her while she was still in the
NICU. "She's a spunky baby. That's helped her a lot while she's been
here, but I won't comment on what it might mean when she's a toddler or
a teenager!"

How right he was! She is darn spunky. For example,
I've been trying to get her to feed herself some Cheerios. She is
perfectly capable of this; she constantly picks up toys and puts them in
her mouth, and she can easily pick up very small objects. But when she
realized I was trying to get her to feed herself, her stubborn streak
came forward. She wouldn't pick up the food. So I took one of her hands
out from beneath her high chair tray and tried to put the Cheerio in it.
She stuck her lower lip out, dashed her hand back under the tray, and
opened her mouth wide. I think her philosophy of life is: "Why should I
take the trouble, since mommy can do it for me?" So...I took the
Cheerios away. I won't offer them as "must eat" food - so if she wants
them, she'll have to feed them to herself!

August 19, 2006

Now we all have Anastasia's cold. Ugh. Actually, it's
a bit more than your average cold, as it comes with a fever. Anastasia
seems to be feeling better, but I feel like death warmed over. My
husband is just beginning to get sick.

I'm hoping that as she continues to feel better,
Anastasia will start eating more. It seems like a futile hope. Feeding
times get more difficult each month. Yesterday, Anastasia cried when I
put her in her high chair :( Please, if you feel moved, pray that
our girl's eating will improve...that she'll feel hungry and be able and
eager to drink lots of formula and eat lots of solids.

Mostly, Anastasia resists the formula, so when we go
to the feeding clinic on Tuesday, I'm going to ask if I can put just a
little juice in each of her bottles. Maybe if I give some variety to the
flavor, she'll be more eager to drink.

August 19 (part II)

Today is the second time Anastasia has wanted to feed
herself with a spoon. This time I caught it on camera! She was a bit
messier this time, but hey! Isn't avacado supposed to be good for the
complexion??

August 21, 2006

I think we have our hands full. :) Yesterday
evening, Anastasia spent a good portion of her time trying to figure out
how the buckle on her bouncy seat works. She studied it closely, and
fingered it when she thought we weren't looking. When she realized we
were watching, she dashed her hands away and grinned mischievously. I
think she's her daddy's girl! (As an example of his dexterity and
early mechanical ability, when my hubby was just two years old, he
removed the hinges from an old Victorian door in the house, then sat
back and watched and laughed when someone entered and the door swung all
over the place. Thank goodness he couldn't reach the top hinges!)

Today, Anastasia is scheduled to get some
vaccinations at the pediatrician's. That should be fun.

August 22, 2006

We had a long session at the feeding clinic center
today. We began by having Anastasia weighed and measured. She's about 16
lbs. 9 oz., and 27 3/4 inches long.

We then saw the RN, nutritionist, and physical
therapist. Unfortunately, Anastasia remembers all too well that the PT
fed her barium (for her swallow study), so she started crying the moment
the PT handed her food. When I took over the feeding, she was a little
more receptive, but was increasingly tired and cranky, despite my best
efforts to get her there hungry but not famished, and as well rested as
possible.

The RN (and later the developmental pediatrician)
reviewed Anastasia's growth curves with me. Oddly, her curve looks
better on the full-term baby chart (using her chronological age) than it
does on the preemie chart. But on both charts, her growth has slowed.
More troubling is that it's not just her weight that's dropping off the
curve; now it's her height, too. The question is whether this slowing is
caused by poor nutrition or some other cause.

We talked about adding calories to Anastasia's
formula with different powders or oils, but for various reasons, these
were determined to not be a good choice for her. The nutritionist said
she really preferred to keep Anastasia on formula until she's one year
corrected age, but ultimately decided that we should try mixing formula
with Pedisure, to see if this would help Anastasia's eating and growth
improve.

The PT and nutritionist both agreed I'm probably
holding Anastasia back with her eating. Of course, they didn't put it
quite that way. But when I told them I didn't think Anastasia was ready
to eat pancakes with syrup, they looked shocked. I told them she gags on
these kinds of "big girl" foods. The PT's reply was: "Let her gag!"
Apparently, the gagging and vomiting may just need to be worked through.
"You have a small window for her to learn how to eat regular food. If
you don't utilize it, things will only get worse," the PT said.

So...I'm on orders to offer Anastasia pretty much any
food (except peanut products, honey, or hard carrots), including
sandwiches with meat (finely diced, like tuna), pieces of pizza,
cheesecake, string cheese - even Cheetos! (When my husband balked at the
latter, the nutritionist looked him in the eye and said, "I don't care
about the bad stuff in them right now. She needs the calories.")

I'm also supposed to alternate feedings with the
bottle and with the spoon. For example, in the morning, I might give her
a bottle but no solids, and at the next meal, I'd offer solids and
perhaps just a little formula to drink - if she's interested at the end
of her meal. So by the end of the day, she'll have three meals where she
drank formula only, and three meals where she ate solids with perhaps
just a little formula.

At the time, I felt very frustrated by this part of
the visit. I wanted to say: "You try taking her home and having
her vomit all the time while you coax her to eat every three hours!"
Um...yeah, I've been a little stressed. And the feeding clinic folks
really don't deserve that attitude. They are always warm and helpful...

Next, we saw the developmental pediatrician. First he
addressed Anastasia's reflux. Upon my descriptions, he felt we needed to
try to get her reflux under better control. (The Prilosec she takes gets
rid of the acid in the refluxing fluid, but it doesn't actually prevent
reflux.) So he perscribed Reglan. Yup, that's right. The stuff I took
for a while to up my milk supply.

Because the stuff made me so depressed, I asked if
this was a common side effect in children. He said no, but also admitted
that with little ones it might be difficult to know whether or not the
drug is affecting their mood adversely. He also said that Reglan seems
to really work for some children (by getting the food to pass the
stomach more quickly, thereby giving the body less to reflux up), but
doesn't seem to work at all for others. So we're to try Reglan for a
couple of weeks and see what happens.

If it doesn't help, the next step is to send
Anastasia to a GI specialist. That could, potentially, lead to surgery
to correct her reflux. Or it could rule out reflux as the main problem.

The doctor also said Anastasia's behind in her gross
motor skills - which, of course, we already know. He said he was
concerned, but unable to make any diagnosis at this time. I mentioned
that the PT thought Anastasia has ataxia, but I wondered what might be
causing the ataxia. He said he didn't know, but also mentioned
that an MRI might be in order.

Apparently, all those ultrasounds Anastasia had done
of her head when she was in the NICU may not tell the whole story.
Ultrasounds can't see the lower back part of the brain (cerebellum), and
ataxia is caused by issues in this part of the brain. An MRI might shed
some light, but we agreed that we'd take a "wait and see" approach. The
good news, as the doctor pointed out, is that Anastasia is still making
progress with her motor skills. If she had a serious problem, she
wouldn't be progressing.

The RN picked up on my frustration and stress...I
guess her clue was when I started crying. So the doctor also made a
point of telling me that it's not my fault Anastasia isn't eating well.
Intellectually, I know this, but as her mommy, it's one area I somehow
feel I should have control over. But as the doctor said, "You only have
control over what you offer her. Everything else is up to her." I knew
it already, but it was still nice to hear.

I also confessed that a great deal of my stress comes
from the fact that I keep wondering if they're going to give Anastasia a
G-tube. The doctor was very comforting about that. First, he showed me
how low on the growth curve she'd have to be for them to really consider
a G-tube. Thankfully, she has a ways to go before she gets there. He
also mentioned the variety of tests they'd do first, to rule out certain
medical issues that could be causing her to eat poorly. And finally, he
explained why a G-tube isn't so awful. "If you don't like it, it can
always come out," he said.

I mentioned that so many babies with G-tubes never
learn to eat orally - and as I said it, realized this is true only with
babies who've never eaten orally at all. "And if down the road Anastasia
does need a G-tube," the doctor continued, "you may find that it
makes eating a much more pleasant experience for her. She can eat for
the joy of it, instead of feeling stressed because you're wanting her to
eat more than she desires. In the end, she might end up eating better
that way."

This is not to say that eventually Anastasia will
need a G-tube, but it was great for me to know what the general plan is
regarding her care. I know I don't have to fret (just yet) about
surgeries.

As you can see, we have a lot to digest. It can be
overwhelming to hear that your baby might need an MRI, might have some
serious underlying issues, might this, might that. But I just remind
myself that God is in control. There's no need for me to stress out or
fret because he's got it all taken care of. I remind myself of that a
lot these days :)

August 23, 2006

Whenever I write about new plans for Anastasia's
eating, I get a lot of email. Mostly, it's broken down into two
categories:

1. People who can't believe that experts would
suggest my baby eat X, Y, or Z, and

2. People who offer advice based on their own
experience.

Most (but not all) of the folks in the first category
are people who've never had a baby who doesn't eat well. They tend to
suggest eating lots of vegetables and fruits, or sometimes smoothies.
Bless them, because I know they want to help, and it's hard for them to
understand that Anastasia is way beyond that. Above anything
else, this girl needs calories. Since she won't consume a lot of food,
we must choose foods that are high in calories.

I wonder, too, if I make it sound like Anastasia is
only eating Cheetos and cheesecake. Rest assured, she's not. She mostly
gets "good" food like avacado, beans, oatmeal, and applesauce.

I also want to clarify that Anastasia's main problem
right now isn't about eating solids. It's that she won't take her bottle
or cup. And because she's only about 8 1/2 months corrected age, she
really should be getting most of her calories from formula. We're trying
to make up for the fact that she doesn't get enough formula calories to
maintain her weight by offering lots of high-calorie solids.

A few folks were also shocked at the PT's response to
Anastasia's gagging. This is my fault, because I neglected to say that
we don't think Anastasia has a sensory issue. They've looked at her for
such issues repeatedly. Instead, it appears that Anastasia pushes the
food to the back of her mouth before she's chewed on it - hence the
gagging.

And when I said that the doctor wanted to "wait and
see," I was referring to the MRI. There's nothing yet that points to a
specific label for Anastasia's motor skill ability. (In fact, I
guarantee that if I were in someone's body without amniotic fluid for
five weeks, and then spent 133 days laying in warming beds, incubators,
and hospital cribs, I'd need physical therapy, too!) Anastasia's motor
skills are being treated with physical therapy every single day.

But I certainly don't mind people emailing me
about these issues. In fact, I love getting your emails! And I always
appreciate it when someone takes the time to try to help my little babe.

So far, I'm encouraged by Anastasia's response to the
half formula/half Pediasure bottles. Yesterday, she gobbled them right
down. She seems to love the flavor. This morning was less encouraging,
as she only took about 2 1/2 oz. But she also hadn't had any of her
reflux medications yet.

Last night, I also realized that I completely forgot
to say anything about Anastasia's pediatrician appointment the day
before yesterday. It went just fine; Anastasia fussed a little and gave
dirty looks to the pediatrician, and while she cried at the shots, the
crying only lasted a minute. The doctor was concerned about her eating,
and wants to see her a little sooner than is typical, but she also
appreciates that we're working closely with the feeding clinic. She
ended by saying, "She's really doing remarkably well, given her
background." Always nice to hear :)

August 23 (part II)

I just got off the phone with the feeding clinic RN
who handles Anastasia's case. She confessed that she really feels
Anastasia's eating issues are reflux related. "We've kind of
dilly-dallied and waited for her to outgrow her eating issues, but now
we really need to be aggressive. In my opinion, if we can get her reflux
under control, she's going to be fine. Her eating skills are good for
her age, so that's not the problem."

She said she and the pediatrician just reviewed
Anastasia's dosage of Prilosec, and feel that it could be increased a
little. However, they don't want to try upping it until she's been on
the Reglan for a bit. (If we start one medication and up another and she
suddenly gets better, then we don't know which medication did the
trick.) So, the revised plan is to do Reglan, and if that doesn't work,
up her dosage of Prilosec, and if that doesn't work, send her to a
pediatric GI specialist.

Because I've had a lot of emails about Anastasia's
gagging and the feeding clinic's response to it, I asked her to clarify
their thoughts on this issue. She says they feel it's just that
Anastasia hasn't had much in the way of solid food experience. In other
words, she just needs more practice taking foods that need to be chewed.

August 25, 2006

Each day, Anastasia becomes more and more of a
daddy's girl. She so looks forward to her daddy coming home for lunch,
and waits anxiously for him to come home for the night so he can hold
her and play with her. A couple of nights ago, my hubby had some outdoor
things he wanted to accomplish. I followed our usual routine of eating
and then getting Anastasia to sleep...but she wouldn't go to sleep.
After a while, she started saying "dada" and "daddy" over and over. When
it was two hours past her bedtime and she still wasn't asleep, I called
her daddy inside. The two played for a little while, and then Anastasia
went right to sleep. She was not going to miss her daddy time!

Anastasia also has a keen sense of humor. She loves
it when I do silly things - especially to music. A friend gave us a CD
called "Kid's Stuff" with the King's Singers and actress Judy Dench.
It's mostly calming, beautiful music, but there are a number of fun
tunes on it, too - including "Yellow Submarine." Anastasia loves this
song, and will laugh hysterically if I do silly imitations of 1960s
dances to it.

I'm not sure what to think of her new eating schedule
just yet. She's barely eating more solids than usual, and she ends up
eating less formula. Every day, her intake gets better, though, so I'm
giving it the weekend before I make any changes. I'll weigh her this
afternoon, just to make sure she's not loosing weight.

The Reglan hasn't helped so far, either.

August 26, 2006

Normally, I try to keep my entries on this website
centered around Anastasia, but sometimes I think it's good to give you a
glimpse of what's going on with her parents, too. Last night, for
example, I spent the evening at a local theatre, watching some friends
perform in a musical; my hubby stayed home and cared for Anastasia.

It wasn't until I got to the theatre that I realized
I really haven't been out much (other than to go to doctor's offices,
the hospital, or the store) in about a year and a half. I felt like I
was suddenly living someone else's life...or that I had just walked into
another dimension. My life pre-Anastasia seems almost unreal...Did it
really happen? Or was it just a dream?

The whole evening was surreal, and made me realize
how secluded my life has become. I enjoyed myself. (It was especially
nice to catch up with old friends I hadn't seen in eons). But I enjoyed
myself in an odd, detached sort of way.

I suppose life will be like this for at least another
nine months, since RSV
season is fast approaching. But once it's late spring, Alexei and I
imagine we'll feel more free. The threat of germs to Anastasia's health
will be greatly reduced, and we hope to gradually introduce her to more
people and places.

August 27, 2006

Anastasia's been making some strides in her motor
skills this week. Most notably, she's sitting up much more frequently. I
can't just plop her on the floor and let her sit on her own yet, but I
can put her on my lap or between my legs and either not hold her or just
barely touch her knees and she'll sit for 15-20 minutes. This is very
encouraging, since the doctors have all been concerned she wasn't
sitting much yet.

The other day, my hubby also had Anastasia standing
by herself with her arms on the couch. However, she needs to be properly
motivated to do this (i.e., the kitty needs to be sleeping on the
couch).

Yesterday, I was holding Anastasia on my hip while I
brushed my hair with my free hand, and she looked into the mirror and
started laughing. She seemed to be staring at herself, so I'm not sure
if she suddenly realized the baby staring back at her was herself...or
what. But it's always a joy to hear her laugh. There's nothing more
beautiful than babies laughing!

She continues to make me mildly jealous, too. Out of
100 words she speaks, 99 of them are "daddy." Last night, for the first
time, she very purposefully threw out her arms to say "pick me up," and
it wasn't me she was looking at. Nope. She was practically throwing
herself into her daddy's arms!

August 28, 2006

It's been six days since Anastasia last went to the
feeding clinic. I can't see that her reflux is any better yet on the
Reglan. She's eating considerably less from her bottle and cup.
And it doesn't seem as though she's eating much more in the way of
solids. However, I weighed her this morning, and she's gained two
ounces! That's a great weight gain for her in such a short amount of
time. (That brings her to 16 lbs. 11 oz.) That Pediasure must be making
the difference!

I also find myself less stressed about Anastasia's
eating...mostly (I think) because I only give her three bottles a day
now, and two are while she's sleeping. (She always eats pretty well when
she's sleeping.)

Yea!

August 30, 2006

Yesterday, Anastasia had lots of visitors, including
my in-laws. She's not as familiar with them, and cried when my
mom-in-law tried to hold her. So I hung onto her for the rest of the
visit. Anastasia continued to be pouty until I showed her grandma and
grandpa how well she can stand (with me holding onto her hips). They
applauded her, and suddenly Anastasia was all smiles...for the rest of
the visit! I think I have a little performer on my hands :)

Anastasia now has a paunchy tummy. (Yea!) And as long
as she continues to gain weight, I have to say I love this new eating
plan. It is much less stressful for both of us because I don't
have to struggle to get a bottle down her at each meal. Here's how we do
it:

First thing in the morning, I offer Anastasia a
bottle (half formula, half Pediasure, making the bottle 27 calories per
ounce). As I wash up bottles and do dishes, I sometimes offer her
something she can feed herself, like a Zwieback toast. Usually, she
doesn't eat much of it, but it's good practice. Most often, though, I
just offer her a toy.

At her second meal, I offer about three different
solids. Foods we currently use include: Underwood meats (which are
chopped finer than tuna), breaded chicken strips with lots of ranch
dressing, avacado (she still prefers it mixed with formula, instead of
mayo), waffle with lots of berry-flavored syrup, applesauce (because she
loves it), yogurt, and pudding. Once she starts refusing solids, I offer
about an ounce of the formula/Pediasure mix. She'll typically only take
about a quarter of this. Then I offer her something she can feed
herself, like Cheetos or pieces of chopped up cheese. (She likes to feed
herself cheese sticks, but has a strong tendency to get tons of cheese
in her mouth and not know what to do with it. This results in
gagging...So I only occasionally offer her a complete cheese stick.)

For her next two meals, I also offer solids. By her
fifth meal, it's evening, and she's sleeping; I offer her an 8 oz.
bottle, which she'll usually finish or come close to finishing. Finally,
at about 11:30 pm, I wake up and offer another 8 oz. bottle, which she
usually comes close to finishing.